Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

Say it ain't so. Below is an open letter from Valerie McDonald, former SickKids Family Advisory Committee chair, expressing her dismay at planned cuts to SickKids library services reducing book and multi-media and multi-language services to Canada's sickest kids and their families. The Toronto Public Library meeting minutes are underneath - please forward and consider registering disagreement with the decision.

I was dismayed to learn that the Toronto Public Library Board has made a decision to withdraw services from the Reading Room at Sick Kids. Two of my children were treated for cancer at the hospital and we were frequent users of the Reading Room during their collective 2 years as in-patients. During that time, my daughters were able to keep up with school projects using the reference collection, enjoyed presentations by visiting authors and found refuge from treatments, tests and noise.

I’m concerned that without the expertise of librarians to support the program, and without the partnership of the Toronto Public Library, the collection and services provided to families and children will be compromised. Because of the joint sponsorship, for example, librarians order books, audio-books and other resources for children of all ages, including infants and pre-schoolers, while TDSB has a mandate to serve only school age children. In addition, the TPL connection allows librarians to access resources such as multi-lingual books and DVDs through inter-library loans. Their expertise greatly benefits families from diverse communities who find the hospital experience particularly frightening and overwhelming.

Several years ago, the TDSB made significant cuts to the teaching staff provided to students at the hospital because of a peculiarity in the Education Funding formula. The formula dictates that the board can only receive funding for children registered as TDSB students. However, as you know, Sick Kids serves children from all across Ontario and Canada, most of whom are in and out of hospital and therefore retain their enrollment in their home schools. A minor compromise was reached between the board and the Ministry of Education so that the cuts were not as dramatic as those first proposed, but they did reduce the access children had to hospital teachers. Because of that experience, I worry that Sick Kids programs will always be more vulnerable to cuts in TDSB programs whenever the board faces difficult financial choices, just because the hospital is an anomaly for all of its funders. Without the support from the TPL, it will be even more difficult for the school board to continue to provide adequate service at Sick Kids.

The children who use the services of the Reading Room are among the sickest and most vulnerable in Canada. A strong partnership between teachers and librarians to provide a normal and enriching childhood experience adds tremendously to their healing in a way that is difficult to quantify. I urge you to reconsider your decision.

The relevant December 14, 2009 Board meeting minutes discusses the cutting of in-hospital services (reprinted below) and catalogues other lost cultural and learning opportunities.

Reduce Hospital Services ($0.105 million, 1.4 FTE)

As part of the Home Library Service review conducted in 2000, the Library Board
approved the discontinuation of staffed institutional deposits where opportunities existed for the institutions to play more of a role in the provision of library services. Staff explored all opportunities which resulted in replacing most of the staffed institutional service with deposit collections coordinated by institutional staff and volunteers. Out of 24 institutional service locations that existed at that time, four remain: Bridgepoint Health, the Toronto Rehabilitation Institute, Sunnybrook Health Science Centre and the Toronto Hospital for Sick Children.

Service at Bridgepoint Health and Toronto Rehabilitation Institute includes programs and bedside service to residing patients. Both hospitals are long-term care facilities. Adjusting the current service model to one based on deposit collections that are coordinated by hospital staff and volunteers would standardize the Library’s institutional service at these locations and result in estimated savings of $0.065 million in staff costs (1.0 FTE).

In addition, Library collections, services and programs provided in partnership with Toronto District School Board, to children who are patients at the Hospital for Sick Children would no longer be provided by TPL, resulting in additional estimated savings of $0.040 million (0.4 FTE).

There are no changes considered for the Sunnybrook Hospital where the federal
Department of Veteran Affairs covers two-thirds of the costs of library service and
collections for veterans residing at the hospital.

The civic cost of budget cuts is best described in cold clinical bureaucratic bluntness, such as the action item Reduce Branch Programming ($0.120 million)

Reduced recreational, cultural and educational programming across our Research &
Reference and Branch libraries would impact children, teen/youth, newcomers, adult and older adult audiences, and would include fewer author events; arts, culture and
entertainment activities; hobbies and leisure, and life-long learning programs. It would also reduce performance and employment opportunities for local artists, authors, performers and storytellers. Estimated total savings amount to $0.120 million, as follows: ...

The Sasha Bella Forever blog began in 2006 as a tribute to our first daughter and her caregivers as we brought her home from the hospital to die. Expecting just a few days together, we had five incredible weeks. These posts celebrate the life of children with complex care needs and their families and staff partners in care. The posts also share the work of The Sasha Bella Fund For Family Centered Care at SickKids Foundation across the spectrum of care, education and research. From Sasha's experience, the fund and blog focuses on partnership, inter-professional and inter-disciplinary teamwork, palliative and end of life care, patient safety, care for the care-givers, patient and family advisory, peer support and the special challenge of the ICU. Please share, or Like or comment if you are moved by a particular post or think of The Sasha Bella Fund during your charitable giving.Regards,Jonathan Blumberg (Sasha's dad)

The Fund supports family-centered interprofessional care, family advisory, patient safety and palliative care with low cost initiatives like awards, small grants to programs and research, website initiatives, murals, sharing our story and volunteering at the hospital. See a list of fund projects and please consider donating securely online at Sasha's SickKids Foundation page (a tax receipt is emailed immediately) or by calling Laurel at SickKids Foundation.

All donations to a directed family fund like the Sasha Bella Fund For Family-Centred Caregoes to projects at SickKids Hospital with no Foundation overhead.

What is family-centered care? Frank Gavin offered a great definition in the 2005 Family Advisory Council report:

"Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Thanks to all the almost 1000 families who have helped SickKids through The Sasha Bella Fund since 2006 and who in October 2009 helped raise $20,000 for Sickkids Hospital and Bloorview Kids Rehab. Special thanks to the performers who donated their special skills, Sho Mo + The Monkey Bunch, Charlie and Little Fingers, Deb Maes, Bloorview therapeutic clowns and Master Choung Taekwondo club, and The Stockyards, Ravisoups and Mildred Pierce for an incredible lunch. Checkout pictures of the 2009 Fun Day by Peter Fenyevesi and Bryan McBurney.

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids ... encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look." Janis Purdy and Diane Flacks

Sasha was born with Alagille Syndrome and pulmonary atresia, serious liver and cardiac defects leaving her ineligible for transplants. Cardiac surgery was risky but without more oxygen to her lungs Sasha would die. Our core SickKids team was the 4D nurses, cardiologist Dr Jennifer Russell, surgeon Dr Glen Van Arsdell, catheterization specialists Dr Lee Benson and Dr Jin-Lee and gastrointerologist Dr Simon Ling. The plan included catheterizations to widen tiny arteries, surgery to install a central shunt at 3 months, more caths and more surgery to partly rebuild her collateral arteries into a pulmonary artery. A blue baby came home after birth and grew into a golden haired 18 month cherub with only short hospital stays. She appeared to thrive; yet as we rebuilt Sasha's heart, her liver weakened. A second surgery resulted in hemorrhage, fever, liver failure, portal hypertension, GI bleeds, and a jejunal fistula to her belly. We accepted Sasha was dying when she required daily blood transfusions. She came home supported by the Temmy Latner Centre, TCCAC nurses and SickKids - we expected 3 days with our peach but she stopped bleeding and lived five precious weeks.